What are the signs of caregiver stress? Ask your questions get expert answers.

[AARPTeri]

AARP Caregiving Expert Series:  Week 1:  What are the signs of caregiver stress?  Where can I get help?  May 6-12, 2019

Welcome to week one of our four week Caregiving Expert Series here in the AARP Online Community, Caregiving Forum.  Our AARP Expert, Amy Goyer, is here to help with questions you have as a Caregiver.

This week’s topic is What are the signs of caregiver stress?  Where can I get help?

Caregivers care for someone with an illness, injury, or disability. Caregiving can be rewarding, but it can also be challenging. Stress from caregiving is common. Discuss this with our expert.

[agoyer]

Hi fellow caregivers! 

The stress of caregiving can have very subtle effects on us, sometimes not immediately noticeable...until they catch up with us and we wind up with health problems. For 10 years I very intensively cared for both of my parents (who lived with me most of that time) while also caring for my sister long-distance, traveling for my (full-time) work, and dealing with the rest of my life. I knew I had a heavy stress, and I found ways to take care of myself as best I could. Nevertheless, 10 yrs of high stress caught up with me. My Mom died in 2013, my sister in 2014 and my Dad passed on last June 2018. Over the past year I've been dealing with a lot of health issues. My immune system was highly affected by all that stress! 

That's why finding ways to get a break from caregiving is so important! Stress is cumulative - it builds up over time and prolonged stress can have negative consequences. Unfortunately, many caregivers don't realize the stress is having an affect until they reach that burnout stage and have major physical and/or mental health problems.

It's understandable - we just keep going and doing what we need to do. In some ways the stress propels us forward. I remember feeling that if I stopped and relaxed I may not be able to get going again - know that feeling?! But it's vital that caregivers become more aware of the effects of stress - on us and our loved ones. If we are stressed, exhausted and depleted, we can't possibly be the best caregiver we can be. 

Some signs of caregiver stress may include:

• Sleep disturbances - insomnia, waking up multiple times during the night, difficult falling asleep, lack of restorative sleep, being sleepy all the time or falling asleep at inappropriate times.
• Anxiety, depression, overwhelming sadness
• Extreme fatigue
• Not caring about things you normally do care about
• Crying excessively
• Short-tempered/angry
• Unusually strong reactions to people, conflict, disagreements
• Repeated illness 
• Immune system disorders
• Low libido
• Headaches
• Tense muscles and pain
• Weight gain
• Panic attacks
• Loss of appetite
• Other areas of your life are neglected or  "falling apart" 

If you're noticing these things most of the time, you are most likely experiencing "burnout." 

For me, deep fatigue that wouldn't go away even when I got a good night of sleep was a red flag, as well as constantly getting sick. What have you noticed about the stress of caregiving?

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

[viposen]

I am 60 yrs old and the primary caregiver for my 88 year old mother. We live together in a 55+ community, which I enjoy very much. I've made friends and have people locally that I can call on for rides, etc. if necessary. 

I've recently realized I can't leave her for extended periods of time alone anymore. Her mobility is  limited and since a bout of shingles she is very weak. I'm in the process of making a claim via her long term care plan, which she has paid into for close to 20 years. Once I receive approval I want to get some part time care so that I can participate once again in my life's activities. 

My question is about finding assistance. The Long Term Care plan says that in order to get composated, I need to have the caregiver under supervison, but it doesn't necessarily need to be a service. Who can I contact about finding someone who would be appropriate? I am hoping to find someone who is flexiable and might be able to cover overnight once or twice a year for me. And who is responsible for the supervision?

Any assistance would be greatly appreciated.

[agoyer]

@viposen Hi! It sounds like you are doing a great job caring for your mother!  And also you understand the importance of friends and finding ways to relieve stress. Glad the 55+ community has worked out well for both of you and you've made friends there.

Your question is a good one. Long-term care insurance policies vary greatly. Here is a good article with more information about LTC insurance policies. 5 Facts You Should Know About Long-Term Care Insurance

Some simply monitor the level of care needed and have a flat rate per day of care and "reimburse" you for that amount and you determine how to use it (my parents' policy was like that.) Others require that you work with an agency that provides the home care workers and then the LTC insurance company reimburses the agency directly. Yours sounds like kind of a hybrid of those. 

LTC insurance policies also vary in terms of coverage. So be sure to find out if hers covers home care, assisted living, skilled nursing - or a combination of these. Some policies even cover necessary home modifications. 

A few ideas about how you could have supervision for someone you do not hire through an agency/service:

• Ask what documentation and what type of supervision do they require for home care workers paid using the LTC insurance.
• Since you will be there and will be coordinating your mother's care, will they allow you to be the supervisor? (In other words - is there concern just that a home care worker shouldn't be there every day with no one checking to ensure they are doing their job?)
• If they require supervision by someone with certain qualifications, ask specifically what those qualifications are.
• You might be able to hire and pay a home care worker directly (using the LTC insurance) and also hire someone to do the supervision (fewer hours than the home care worker). Even though this will cost more, it's possible that it will still cost less overall than hiring someone through an agency/service.

This article has some additional tips about different ways to hire paid caregivers/home care workers: How to Hire a Caregiver.

I'd love to know the answers to these questions so please keep us informed! Happy to continue to help as you learn more.

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

[JaneCares]

---

@viposen wrote:

I am 60 yrs old and the primary caregiver for my 88 year old mother. We live together in a 55+ community, which I enjoy very much. I've made friends and have people locally that I can call on for rides, etc. if necessary. 

I've recently realized I can't leave her for extended periods of time alone anymore. Her mobility is  limited and since a bout of shingles she is very weak. I'm in the process of making a claim via her long term care plan, which she has paid into for close to 20 years. Once I receive approval I want to get some part time care so that I can participate once again in my life's activities. 

My question is about finding assistance. The Long Term Care plan says that in order to get composated, I need to have the caregiver under supervison, but it doesn't necessarily need to be a service. Who can I contact about finding someone who would be appropriate? I am hoping to find someone who is flexiable and might be able to cover overnight once or twice a year for me. And who is responsible for the supervision?

Any assistance would be greatly appreciated.

---

Hi there,

I think the best path is to call the Long Term Care plan directly and ask your questions. Beats me what they mean by supervision: is it an RN who does a first assessment and then keeps track of the caregiver? That's how Medicare-reimbursed skilled home care starts. I used to be a geriatric care manager, and one client received 3 hours twice a week, which didn't seem like a lot to me, but then she was pretty independent and your mother sounds like she needs a fair bit of help, and someone to be with her if she falls or feels unwell suddenly. 

I looked around in the aarp.org site and found articles about whether or not to BUY long term care insurance, but nothing on how to use it well if you DO have it already. Maybe i missed something. Perhaps your mother's plan has an online explanation that can help you focus your questions once you get on the phone with the plan. Of course, their job is to give her as little as possible, and after 20 years of her dutifully paying in, it's time to get something out of the plan, for sure.

I'm so glad to hear that you both enjoy living there, and you have a full and rich life. What might be best path forward is to find out what the LTC plan covers, and then supplement that, with her funds not yours, savings, whatever, to pay for overnight respite care or more extended care. She might enjoy having a couple of different caregivers/aides to get to know. And you'll have more than one person to rely on. 

I hope other folks will chime in. If you can, please let us know what you learned from the plan and your own experience, as we are all enriched by sharing our adventures in caregiving. 

Thanks for writing, and all the best!

Jane